holding handsWatch them, and you’ll see it for yourself: a child or adult, with autism or another disability, holding hands with a parent or other caretaker as they walk together. Sometimes there is a version of this, where the disabled person holds the other’s purse, or elbow — but somewhere, somehow, there is a holding.

I really dislike it when Joseph holds my hand. It was cute when he was small and all the other kids did it, but now it sticks out like a sore thumb. This small gesture may as well be huge words painted up in the sky: DISABLED. This person cannot make it alone, handholding says. S/he needs someone more intelligent, more together, more able, to maneuver them through life. 

So I’ve been encouraging Joseph to let go. He dances on the boundary of independent versus dependent, and I would have him walk beside me, our four hands swinging, happy, confident and alone.

It only works sometimes. Joseph, of course, doesn’t put all that meaning into it. He likes me, likes my support, likes the comfort of holding my hand. It’s as simple as that – to him.

Independence is an issue that seems to have risen up by itself lately — independently, if you will. A few posts ago, I discussed the public bathroom dilemma. That’s been slowly shifting to the point where, some of the time, Joseph will stand outside the bathroom door while I use it, and I will stand outside the bathroom door when he uses it. Yesterday that happened twice with great success! I felt really encouraged.

Until we went to the hair salon where, for some mysterious reason, Joseph got hit with an anxiety storm. When I tried to pee on my own he started screaming – loudly! Imagine it: smallish, cute hair salon in a little house, everyone able to hear the panic-stricken screams. When I, pants down to my ankles, pulled him into the bathroom with me, he hit the mirror, hard, with his fists. Luckily, it didn’t break. He stood there and screamed, over and over again, until I gave up on the idea of calming him down for a haircut and, pulling him through the room and stammering apologies, got him out the door and into the car.

When we got home, I cried. Lots.

IMG_0380Then I texted my girlfriend three little words: “I hate autism.”

There are lots of good things happening, too. An Indian family is renting our guest cottage for a few weeks, and the 10 yo boy and Joseph are becoming friends. They are both musical and they both like to build, so it’s nice to see them hang out. We haven’t seen that a lot and it is a thrill to see it now.

Joseph is the only fourth grader who insists that his mom or dad walk him to his classroom in the mornings. When I walk him, he also usually insists that we — shudder — hold hands. A while ago, I promised him that, if he would walk by himself for a week, he could take his pick of fancy restaurants and we’d take him out to celebrate. He’s obviously been mulling this over, because he announced that he is going to do it, starting this Monday. I wonder if, when push comes to shove, he actually will. Oh, please please please God make it so. Help this soul to step up to the next level, one where he can stand strong within himself.

Attachment is that thing that wakes us up in the night, makes us slaves to our lifestyles, makes us miserable with life as it is. So, even as I long for Joseph to grow more fully into his potential, I caution myself to be detached to the outcome. That part, after all, isn’t under my control. As the Bhagavad Gita says,

Disinterested, pure, skilled, indifferent, untroubled, relinquishing all involvements, devoted to me, he is dear to me. He does not rejoice or hate, grieve or feel desire; relinquishing fortune and misfortune, the man of devotion is dear to me. Impartial to foe and friend, honor and contempt, cold and heat, joy and suffering, he is free from attachment. Neutral to blame and praise, silent, content with his fate, unsheltered, firm in thought, the man of devotion is dear to me. Even more dear to me are devotees who cherish this elixir of sacred duty as I have taught it, intent on me in their faith. 12: 16-20

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